Fran
Former desparate mom
These are two excerpts from a book I just started reading "Adults on the Autism Spectrum Leave the Nest" by Nancy Perry. I am excited to get further into this book. So far, it is taking my breath away at the description of my son.
'The executive functions are so important that they alone allow us to live as 'normal human beings'
They include abstract reasoning and problem solving ability. They allow us to imagine the future by predicting the consequences of current actions. They allow us to initiate behavior purposefully, and to monitor our behavior while we are simultaneously moving fluidly through decision making, planning, organizing. And sequencing the steps toward a goal. They allow us to use foresight, hindsight, and insight. In the broadest use of the term, the executive functions also encompass regulatory functions such as the regulation of attention and concentration, and the regulation of emotional states.
It will be easier to understand disability of the executive functions if I paint a picture of an individual with deficits in the long list of skills mentioned above. An individual with executive impairments lives in the moment. This is because he or she can't organize their lives or carry out plans, and can't think about the consequences of their behavior. Not being able to imagine consequences leaves him or her open to doing things on impulse that can have disastrous results, socially and even legally speaking. Also, they have poor short term memory so they forget plans and commitments, thus disappointing others unintentionally, and failing to meet all kinds of obligations. They have impaired attentional systems so they may be either highly distractible or, at the other end of the continuum, perseverative, or 'sticky' compelled to spend long periods of time doing the same thing, like watching TV or listening to the same music over and over. They usually want close relationships, but they don't know how to treat others and have never had normal childhood friendships.
These individuals are close to their parents because of their failure to make friends, but they assert their right and desire not to be controlled by their parents , even as they make poor decisions over and over again. Money is like water in their hands. They make the same mistakes with money repeatedly, never learning from experience, although they 'talk a good game' and can make up very believable excuses for their behavior. Except in truly autistic individuals, all these failures occur alongside virtually normal verbal skills. The conversation, at least the superficial conversation, of these individuals sounds so normal that others expect normal behavior from them. However, they fail over and over again in meeting this expectation.
This is my description of individuals with executive function impairments based upon years of working with them as they go about their daily lives. Researchers tend to prefer a more circumscribed definition of executive functions, emphasizing working memory and organizational abilities. I will make the case for including all these skills and abilities under one label at this stage of our understanding. I take this position because I've seen the way individuals function when they are impaired in all or most of the above mentioned skills. The skills must be available to be used in a coordinated manner, as a group and people who are impaired are generally not dysfunctional in just one skill, like working memory, but in the whole array of skills. Also, people with these impairments function similarly to one another, even if etiologies, that is the organic causes, of their disorders are very different. Because of their similarities, people with significant executive impairments ought to be members of a diagnostic category of their own.'
Ms. Perry speaks to the fact that it is easier to train a young adult with Down's than one with the executive dysfunction.(my thoughts exactly).
Below is an excerpt from a very interesting chapter of why our young adults do not engage in their own lives.
'Initiation may be one of the most difficult executive functions to comprehend. Even the word 'initiation' seems vague. It is related to the concept of taking initiative, but it is more basic. It really means having the ability to start anything at all without assistance from outside oneself. '
I am in the early part of this book but it has been right on with it's description of what my life is like living with difficult child. I highly recommend it for many of us.
'The executive functions are so important that they alone allow us to live as 'normal human beings'
They include abstract reasoning and problem solving ability. They allow us to imagine the future by predicting the consequences of current actions. They allow us to initiate behavior purposefully, and to monitor our behavior while we are simultaneously moving fluidly through decision making, planning, organizing. And sequencing the steps toward a goal. They allow us to use foresight, hindsight, and insight. In the broadest use of the term, the executive functions also encompass regulatory functions such as the regulation of attention and concentration, and the regulation of emotional states.
It will be easier to understand disability of the executive functions if I paint a picture of an individual with deficits in the long list of skills mentioned above. An individual with executive impairments lives in the moment. This is because he or she can't organize their lives or carry out plans, and can't think about the consequences of their behavior. Not being able to imagine consequences leaves him or her open to doing things on impulse that can have disastrous results, socially and even legally speaking. Also, they have poor short term memory so they forget plans and commitments, thus disappointing others unintentionally, and failing to meet all kinds of obligations. They have impaired attentional systems so they may be either highly distractible or, at the other end of the continuum, perseverative, or 'sticky' compelled to spend long periods of time doing the same thing, like watching TV or listening to the same music over and over. They usually want close relationships, but they don't know how to treat others and have never had normal childhood friendships.
These individuals are close to their parents because of their failure to make friends, but they assert their right and desire not to be controlled by their parents , even as they make poor decisions over and over again. Money is like water in their hands. They make the same mistakes with money repeatedly, never learning from experience, although they 'talk a good game' and can make up very believable excuses for their behavior. Except in truly autistic individuals, all these failures occur alongside virtually normal verbal skills. The conversation, at least the superficial conversation, of these individuals sounds so normal that others expect normal behavior from them. However, they fail over and over again in meeting this expectation.
This is my description of individuals with executive function impairments based upon years of working with them as they go about their daily lives. Researchers tend to prefer a more circumscribed definition of executive functions, emphasizing working memory and organizational abilities. I will make the case for including all these skills and abilities under one label at this stage of our understanding. I take this position because I've seen the way individuals function when they are impaired in all or most of the above mentioned skills. The skills must be available to be used in a coordinated manner, as a group and people who are impaired are generally not dysfunctional in just one skill, like working memory, but in the whole array of skills. Also, people with these impairments function similarly to one another, even if etiologies, that is the organic causes, of their disorders are very different. Because of their similarities, people with significant executive impairments ought to be members of a diagnostic category of their own.'
Ms. Perry speaks to the fact that it is easier to train a young adult with Down's than one with the executive dysfunction.(my thoughts exactly).
Below is an excerpt from a very interesting chapter of why our young adults do not engage in their own lives.
'Initiation may be one of the most difficult executive functions to comprehend. Even the word 'initiation' seems vague. It is related to the concept of taking initiative, but it is more basic. It really means having the ability to start anything at all without assistance from outside oneself. '
I am in the early part of this book but it has been right on with it's description of what my life is like living with difficult child. I highly recommend it for many of us.
but I'm going to wait and see what specific solutions the author offers. I have Voc/Rehab dangling in the wind as I don't know exactly what to ask for. difficult child is high functioning but I have a feeling that living with GFGmom (yes, I know this sounds terribly negative!) there may be no reason for me to give up my life any more trying to aim him in the right direction. IF he truly is going to need support on a regular basis I may as well try to accept that he is going to live a life below his capabilities and collecting services/money as his Mom sees fit to find.
